Decision Time: How to Prepare for the Treatment Conversation

If you’re the kind of person who freezes at the counter of your local coffee shop (grande? skinny? decaf? soy?) or spends hours deliberating in the supermarket aisles (free range? organic? low fat? aaargh!), the idea of your doctor asking which treatment you prefer probably fills you with horror.

Thanks to painstaking research, the number of treatments available to treat multiple sclerosis has significantly increased in recent years. Not only are there more drugs than ever before to treat the condition, there are more on the near and far horizon. While it’s reassuring to know that the men and women in white coats are on the case, if you don’t have a degree in medicine, the choices can be pretty overwhelming. For starters, all drugs have different pros and cons, and not all of them may be suited to you. But that’s a decision for your doctor to make, right? Not entirely.

There are several forms of MS and it is an unpredictable disease that affects different people very differently, which means there’s no ‘one-size-fits-all’ treatment for everybody. And if you have MS, you’ll know you’re in this for the long term. That’s why your doctor will usually want to involve you in the decision-making process. For you, this may feel like a huge responsibility – but it’s important to remember that you know yourself better than anyone. Of course, your doctor will guide you through the options, but in most cases you’ll be asked your preferences.

Unfortunately, unlike your choice of outfit for next week’s party, or that new sofa you’ve been agonising over for months, this isn’t a decision that can be put off for long. MS can cause permanent damage to the brain and spinal cord – so the sooner you start treatment, the sooner you can be sure you’re doing everything to protect your health. Here are just a few key questions to help you talk about the options with your doctor.

Does it work?

For a drug to be licensed and available for prescription it has to be proven to be effective, so your doctor will only suggest a treatment that has the ability to benefit you. Different drugs work in different ways, and for MS there are drugs that treat the underlying disease (which aim to slow disease progression), and drugs that treat the symptoms you experience. Those treating the underlying disease – known as disease-modifying drugs/treatments (abbreviated to DMDs/DMTs) – work by tackling the cause of inflammation, reducing the frequency of relapses and hopefully slowing the course of the disease. As we all know, the holy grail of a cure for MS is unfortunately yet to be discovered, so the emphasis of DMD treatment in MS is on preventing damage, thereby protecting the brain as much as possible. The hope is that by starting treatment as soon as possible, and sticking to it, the potentially disabling consequences of the disease will be reduced for the long-term.

What are the side effects?

Different drugs affect people differently, and no drug comes without the potential for side effects – even that aspirin you reach for without thinking about it. For a drug to be available at all the regulatory authorities that have jurisdiction in your country (e.g. the US Food and Drug Administration, or FDA, and the European Medicines Agency, or EMA), authorities must review the clinical data and issue guidance on their use.

Some side effects can be very minor – a dry mouth, for example – or extremely serious, such as liver damage. Your doctor will identify treatments that are most likely to benefit you based on your medical history. He or she will be able to talk you through the common side effects for each treatment, and whether or not these are likely to be lasting or just part of the adjustment period while your body gets used to the medication. When you start taking a new therapy, there is often a period of “titration” where the dose is slowly ramped up to help your body to do this. You’ll find a complete list of known side effects on the information leaflet provided with each medication, but your healthcare team will monitor you to make sure that everything is as expected. It’s important to take your medicine as indicated and for patients to follow guidance included with medication, such as the need to report side effects. To help them, you also need to keep them informed about how you are feeling so that they can make any necessary changes to the treatment or dosage you are taking, to find the best match for your body.

How safe is it in the long term?

After a drug has been tested in clinical trials and it is licensed for use, the manufacturers continue to have an obligation to collect data on its safety in the real world. This is just in case any side effects that weren’t seen during the clinical trials appear over the long-term. Ask your doctor about each drug’s long-term safety profile to help you weigh up the pros and cons. Because after all, when you find a drug that works for you, you’re likely to be sticking with it for a long time.

Will it fit with my lifestyle?

Another key consideration is how easy a drug is to take. If you’re squeamish about needles, for example, then injections may not be the best solution – but if you’re not comfortable swallowing tablets, other treatment options might be preferable. It’s also worth thinking about how often you’ll need to take your medication. The frequency with which drugs are designed to be taken can vary from daily to once every few months. And while some drugs can be easily self-administered at home, others need to be administered by a specialist in a hospital or clinic.

To ensure that safety is monitored appropriately, each drug will also come with different check-up requirements, when you’ll need to be assessed by your healthcare team. The frequency of these check-ups, as well as what is monitored, varies from drug to drug.

Finally, do you travel a lot? Some therapies need to be kept refrigerated – again, it’s a case of deciding which treatment would fit best with your lifestyle.

Am I happy with this decision?

If there are still doubts on your mind, try drawing up a list of the options and writing the pros and cons in separate columns alongside each one. Seeing the choices on paper will help you to be more objective – hopefully the treatment with the most pros and the least cons will be obvious. If you’re still not sure, explain your concerns to your doctor who will be happy to clarify the issues. You may find talking to friends and family, or even a counsellor, beneficial too, as they will be able to help you weigh up what’s most important to you. No one can make the decisions for you, but talking them through with your support networks may help.

What if I change my mind?

Ultimately, it’s your prerogative. MS is a chronic disease that you’ll be managing for the rest of your life. You may find that a drug that is effective and fits with your lifestyle now won’t be the best option for you later down the road. The key is to take your medication as it’s prescribed and to listen to your body (and your doctor!). If you feel like the drug isn’t working, or you’re struggling to take it at the right times, then explain your concerns. Together with your healthcare professional you can make sure that the treatment you opt for is the right one.

Shame the same can’t be said for that new sofa…

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